I am grateful to have this group. My sister, 20, has been recently diagnosed with an anaplastic astrocytoma, IDH wildtype. Her ATRX and p53 proteins are intact, and she has the TERT promoter (pTERT) mutation.
Her tumor is quite unique, in the sense that it is not exactly an adult glioma nor a pediatric one. It has a mutation in the ARID2 gene, which is commonly found in liver cancer and is associated with tumor recurrence.
She has had subtotal resection of her large left insular tumor, and her medical team are now “wrestling” to find an appropriate treatment for her. I have a few questions, and I appreciate your input on them:
- Notable labs: has anyone tried this start up? Its initial mission was to help brain cancer patients find FDA approved drugs that can control their disease but it seems to have changed its direction. It is running a clinical trial for leukemia patients.
- Survivorship: is anyone aware of a long-term survivor of anaplastic astrocytoma, IDH wild type? Some papers on Pubmed indicate that very few make it past two years following treatment.
- Depression: my sister is, quite understandably, depressed and resents the idea of having to undergo radiation and chemotherapy. I want to convince her of the benefits of the cocktail approach, but I have no idea how to open the subject to her. Is any of the caregivers here experienced in this matter?
Thank you all.